Life On The B Side

Taking all that life throws at us one moment at a time

The Knowing September 13, 2019

I recently came across something I had written (but never posted) on August 7, 2018.

 

 

Therapist:  So, what brings you here today?

Me:  I don’t know.  I just feel overwhelmed.  With my life.

 

That was how my very first therapy session started.  It was the spring of 2013.

At the time, I had a job that I wasn’t happy at.  Pretty much no money.  A 7 year old with not-yet-diagnosed ADHD, who was struggling in school.  A 6 year old, whose autism had a chokehold on the entire house.  The relationships with my husband, father, mother and grandfather varied from shitty to non-existent.  I had curled inward; away from my friends.

I felt very alone.  I was a mess.  Drowning.  And I saw no way out.  I didn’t go to therapy thinking there was anything they could do or say to “fix” my life.  I mean really.  What could they do about any of the things I was anxious about or overwhelmed by?  But what other choice did I have?  I had to try something.

 

I ended up going to 5 sessions.   It helped, but not in the way I think most people go to therapy expecting it to.  My therapist helped me to simplify and organize my thoughts.  It was a relief to say some things out loud that I’d been guarding tightly.  Ultimately, we decided that my life boiled down to 2 things.

  1. Sometimes things suck and you just have to get to a place where you accept that they suck and you have to stop looking for/hoping for/expecting different. Just accept.
  2. Some things – like your job and your marriage – can change, but they won’t change (for good or bad) on their own. You play an active role in what you allow. How much are you willing to tolerate before you make steps towards making that change?

 

 

August 2018.

Shaunie (my wife):  What’s wrong?  You got quiet.

Me:  I’m just in a funk.

 

How do I explain it to her?  She’s a “fixer”.  But there’s no easy fix when depression creeps in.  You know all the things.

You know it could be worse; there are people who love you; you have lots of reasons to be happy and grateful.

You know that if you ask her to do something specific she will make it happen.  It’s who she is.

You also know that she’s dealing with her own schtuff and the last thing she needs is you adding to her plate a bunch of “to-do’s” that will ease you to some extent but won’t magically “un-funk” you so there’s no point in putting her through that.

Everything feels like a huge problem and like it will take energy I don’t have.  The house needs tidying up.  I feel fat.  I look old.  I have to renew my license.  The kids need new passports.  I need to catch up on over 200 work emails.  I have a phone call to a sick friend I’m supposed to make.  I need to make arrangements with the kids dad for him to see them again before the summer is out.  I got an email saying my credit score had dropped.  I always have another dentist appointment I need to schedule.   And I always know that the next one won’t be the last one.  I am SO OVER THE DENTIST.

No, I don’t want tea or to laugh or sex.  I just want to curl up in bed.  It’s all I can manage.  That’s what feels easy.  Doable.

We cuddle and I fall asleep.

It’s a sweet relief.  From life.

But now it’s the next day and I can’t stay in bed.  I have to shower and go to work and make phone calls and wash dishes and hang back up the picture that fell off the wall.

 

I think back to my therapy sessions.

What can I control?  What do I have to let go of?  What feeling is weighing me down that I need to just accept/let go off, instead of trying to make it be different?  One thing at a time – The tension in my brain starts to unwind.

 

Ace starts 7th grade soon.  It comes with certain stresses, but, in quiet honest moments, I am not too worried about that.  It’s his second year of middle school and last year went pretty well.  He has a cell phone now, thanks to his Grandma, so I’ll have to figure out some rules around his use of it as well as install some parental controls; but that’s stuff we can manage.

Jay.

This one is a little harder.

My heart constricted a little when I typed his name.  For the last couple of years, I had not fretted about the start of the new school year.  But he’s going into 5th grade which will be his last year of elementary school.  I cannot handle the thought of him leaving that environment.  Elementary school had begun to feel safe for him.  Comfortable.  Predictable in its own way; even as we moved up the grades.  His teachers, the mostly innocent and friendly and understanding kids, the routine.  The special education team was always the same at IEP meetings etc.  Middle school will be different.  There will be a totally different set of students as none of his current friends will attend the same middle school as him.  A different school staff who don’t know and love him – yet.  A vastly different daily routine.  Different expectations.

“Different” with Jay is scary.

 

BUT, I can’t control these things – And certainly not now.  Why am I already stressing about next year?  I don’t know.  Ask my old friend anxiety.

 

Things will settle down soon enough I reassure myself.  I will get over these feelings eventually OR we will address the things that need addressing – Which will serve to calm me down.  I KNOW this.  I know this because I’ve been down this road before.  More than once.

And in this case, today, the knowing is the force holding me together.  It is my life jacket.

 

 

To Be Continued ………….

 

Progress Report and Superflex November 16, 2016

Filed under: ADHD,Autism,autism mom,Family,Uncategorized — The B Side @ 2:54 pm
Tags: , ,

At Jay’s progress review meeting with his speech therapist she told us about a program they had been using lately.  Immediately we became alarmed; and some of the odd things we had been seeing at home began to take shape and make sense.

 

Before I wrote this post, I looked up reviews for the Superflex system.  I thought for sure that my son wasn’t the only one who had problems with it.

All the reviews were good … until I posted mine.  I don’t often write up online reviews, but I feel really strongly about this product and I think that other parents need to be aware of it so they can make informed decisions and possibly speak to their child(ren)s teachers/therapists.

This is a program that markets itself as:

A Superhero Social Thinking Curriculum which provides educators, parents and therapists fun and motivating ways to teach students with social and communication difficulties .

 

It sounds great.  There certainly is a need for such a curriculum.  The main thing that characterizes autism is that it’s a social and communication disorder.  Our lovies (often) struggle with picking up on body language, innuendo, sarcasm, teasing and other subtleties.  They tend to do well with facts and lists and order and black and white.  No grey areas.  They are not usually the best at make believe or abstract concepts.

 

This is why it baffles me that the creators would choose a Superhero who “takes over your brain” as their base for teaching.  In the program there are things (people?) called “unthinkables” who get into the brain and make you do bad things; such as over-react to what is really just a small inconvenience.

 

Jay thought these unthinkables were real.  Think about that for a second.  It’s Scary!!!

Lately we had noticed him talking to himself and actually arguing with himself.

There were times we saw him hitting himself in the head; as if trying to get the bad things out.

 

Needless to say we asked the therapist to cease and desist with that program and that line of language.  I followed up with an email.  She was very receptive to our concerns and assured us that she would take heed.  In her own words,  “I will take the ideas/strategies and modify the presentation so it has nothing to do with the cartoon characters in the program.  We will omit the notion of something taking over your brain.”

 

Maybe in this case, I am the one over-reacting.  Maybe the program is great and maybe Jay would have eventually done really well with it.  I’m not willing to take the chance.  The last thing I want is my baby boy to think there is something wrong with his brain or some “bad guy” in his head.  That makes my brain go to dangerous places.  In the worst of scenarios, he tries to do something harmful to himself to get the bad guys out.

No thanks!!!

 

 

*Ed Note:  After publishing this I found out that this program was used with Ace also when he was getting OT.  He thought it was great and really responded to it.  I say that to say: I can see how it would be good for someone like Ace.  He loves all things super hero and any time you can make something educational into fun, he stands a better chance at picking it up.

I am not saying the program has NO use.  I am just saying that it should be approached with caution if it is being used with students who have very literal thinking and may have a hard time separating facts from fiction.

 

Square 1 September 16, 2011

Last night on FaceBook I put that I was “simply choosing not to be stressed out”. 

Who am I kidding?  I’m stressed.  I’m worried.  I’m annoyed.  I’m pissed off. 

I’m stressed for myself.  I’m worried about my son and his future.  I’m annoyed at the lack of resources available.  I’m pissed off that we have such a hard time and I can’t imagine what it’s like for people who have no insurance or are single parents or who have more than 1 child that needs any kind of services. 

Back in May, Jay had an appointment with a Pediatric Neurologist (child brain doctor) so that she could tell me he needed therapy.  (Duh!)  That lead us to take him to a Speech Langauge Pathologist so that she could evaluate him and agree that he needed therapy.  (Seemed unnecessary to me but ok).  That 45 minute appointment took us 2 months to get and we got a bill for $372.  (Lovely)  She told me, in July, that it would take 2 weeks to get all the insurance business taken care of and then the scheduling dept would call me to set up weekly sessions for Jay.  Up to that point I was still alright.  I mean, it all seemed ridiculous and round-about and it all seemed to be taking a very long time but hey we were making progress.

3 weeks ago, I figured I’d given them more than enough time to get their paperwork in order so I decided to call and check up on my boys status.  By that time a month had passed since his speech pathology evaluation.  They had said it would take 2 weeks remember? 

Voicemail.

The next day I called again. 

Voicemail.

By the way … the voicemail message says, “I’m either on the phone or away from my desk, please leave a message and I will return your call within 24 hours.”  Yeah right!

Today, I finally got someone on the phone.  They tell me that insurance cleared the therapy and our file has now been moved to the scheduling dept.  OK … cool.  I like that.  Progress. 

They transfer me to the scheduling dept and after listening to crappy music for 10 minutes I get someone who informs me that … 

“There are no openings at this time.  You’re on the waiting list and it’s quite long.”

 

WTF ?!?!?!

I spend 15 minutes on the phone with the scheduler trying to work out something.  Anything.  I need to get my son some therapy.  She tells me she can get Jay a spot on Tuesdays, 2 pm at a clinic 50 minutes from our home.

We can’t take that.  Both CC and I work, and HAVE to work, just to keep a roof over our children’s heads and feed them.  How are we to get Jay to therapy an hour away, in the middle of the day on a Tuesday?

There’s gotta be an easier way.  I don’t know what it is right now but I’m back to square one.  Back to making phone calls and googling. 

…..

Last night I was watching the TV show Bones.  There was a girl who along with being deaf had a disease that I had never heard of and can’t remember the name of now.  Her parents were having a hard time dealing with her and had resorted to beating her pretty badly at times.  Don’t get me wrong … I FEEL PHYSICALLY ILL WHEN I HEAR ABOUT CHILDREN WHO HAVE BEEN ABUSED.  It’s unforgivable.  I’m not in any way condoning nor am I making excuses for people who abuse special needs children but maybe, just maybe I can kind of understand it.  Thank God, this doesn’t apply to Jay, but sometimes the children are just that severely affected (by whatever) that it makes life unbearable.  Sometimes, it’s that bad, that getting through 1 more day seems like torture.  Sometimes, it’s just that hard and you just can’t cope and the system just lets you down and you just have nowhere to go and no-one to turn to. 

On the show, when the parents tried telling the police officers of the hard time they had raising her, the response was “But why didn’t you ask for help?  There are services available.”

Really?  There are? 

Sell that bridge to someone who doesn’t know better.

 

Wheeeee !!!!!!!!!!! July 29, 2011

 

 

Nitro, Kingda Ka, Rolling Thunder, Bizarro, Twister

 

 

You’ll recognize those names if you’ve ever been to Six Flags Great Adventure.  Sure, all of the above will get your adrenaline pumping, but I’m telling you … those roller coasters have nothing on The Jay Train.  There are no higher highs or lower lows or drastic drops or quicker twists and turns.  There are surprises around every corner on this autism ride.  You can try to plan for or anticipate what’s gonna come next but you will get it wrong just about every single time.  And believe me, you get your money’s worth on this ride.  You don’t pay $50, wait in line for an hour and then the ride is over in 2 minutes.  No sirree, it’s free.  You do wait for about a year and a half, maybe two years or even longer, but then once you’re on, you’re on the ride forever. 

 

Last week I was cruising.  Happily sitting in my seat taking in the view and loving what I was seeing.  I was so caught up in the view around me that I didn’t see the big drop that I was heading towards.  Then it came out of nowhere.  Swoosh!  I was brought down out of the clouds and landed at the bottom of a water fall.  I stayed in that funk for a couple of days, trying to catch my breath and swim back up to the surface.  I knew I would come out of it, but I didn’t know when.  I told you … you never know what’s coming next. 

 

Yesterday, we found a therapist who I really think can help Jay.  She introduced some new words to our file, like Apraxia.  I’d heard of it before and even googled it before but until now, it had never been a part of our story.  We’re still not sure that it belongs with us since it’s “hard to diagnose with Jay’s limited words” but it’s something we’re keeping an eye (and ear) on.  She also introduced us to PECS  .  Again, something I’ve heard about but not something that had ever been a part of our lives.  While we (us and the doctor) don’t see it as a long-term solution, we do think it can help bridge some communication gaps we have right now and hopefully we can wean him off it as he learns to communicate verbally. 

 

Jay worked/played well with her and responded to her methods.  We are going to set up weekly sessions for him to get that extra therapy since you know and I know that he doesn’t get enough at school. 

 

CC assured me that his job would allow him flexibility to take Jay to his appointments which have to be scheduled for sometime between 8 & 5, Monday – Friday which is not convenient at all but I’m not complaining.  Just gonna work with it. 

 (Drum roll please) … I think this is something we can afford.  

Let me say that again … I think this is something we can afford.  It won’t be easy.  Time or money wise.  We’ll have to tighten our belts a little bit but this is something we cannot afford not to do.  The doctor sees so much potential in my son.  She thinks he’s at a great age for us to really sink our teeth into therapy.  They have a wonderful facility and it’s only 10 minutes from home.  This is do-able and that’s all I need, I will make the rest fit.  This is 1 puzzle piece that I will force into the slot even if I have to use a hammer and chisel to bang it in there.  It may be a little tight, or too loose, or the edges may be too square for the round hole but we will make it fit. 

 

Add to the hope that Doc gave me, I had a lovely evening with the boys yesterday.  Jay got a new toy which he was thrilled with and he’s been a much more pleasant person to be around in general.  He even helped to clean up their room before bed.  A good day, a good evening, a good nights sleep, a good morning today, it’s Friday and it’s pay day.  We (kind of) have a plan in place for Jay which will hopefully yield some positive fruit and the only plan for this weekend is to relax and spend time together, do back-to-school shopping (I like that sorta thing) and go to a 5 year old’s birthday party on Sunday.  (Ace will love that).

 

Hopefully there are no sudden drops coming any time soon.